Time For #MEICC by Colleen Steckel

(In this month's ME Global Chronicle Colleen Steckel  published one of the most exciting ideas  that  I have heard in ages. She has given us permission to publish her article here  on Stonebird.

First a little background : The International Consensus Criteria (ICC) are immensely important because they  provide a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience. 

Importantly  the ICC  separates ME from CFS !

The ICC contains six vital points:

1. A six-month waiting period before diagnosis is not required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the
affliction for six months.

2. Using "fatigue" as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has "chronic fatigue" attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME.

3. "Malaise" – a vague feeling of discomfort or fatigue is an inaccurate and inadequate word for the pathological low-threshold fatigability and post-exertional symptom flare.

4. Symptom severity impact must result in a 50% or greater reduction of a patient’s premorbid (before they got ill) activity level for a diagnosis of ME.

5. Post-exertional neuroimmune exhaustion is the hallmark feature of ME.

6.CRITICALLY individuals meeting the International Consensus Criteria have Myalgic Encephalomyelitis and should be removed from the Reeves empirical criteria (in the USA) and the National Institute for Clinical Excellence (NICE) criteria (in the UK) for chronic fatigue syndrome.

This why Colleen's proposal of "MEICC", as a way of taking back our power,  is so absolutely brilliant !!!)

Time For #MEICC

As the ME Global Chronicle’s August 2017 issue is published, I will mark 28 years being ill with sudden onset ME. While I find it hard to imagine I could feel this ill for so long and still be alive, I know I’m not alone in having been ill without real treatments for over 2 decades.

Being ill this long also means I’ve watched the morphing of my original diagnosis of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) change to a vague fatiguing illness called CFS and the growing disdain by doctors toward my ongoing state of ill health.

 In my opinion, it is time to find out how many patients fit the International Consensus Criteria (ICC) definition.  We can then unify as an MEICC patient group to confront the health professionals in all countries and insist they recognize that the MEICC patients do not belong lumped in with patients not fitting that criteria.  I am suggesting this group use the hashtag #MEICC.

 We now have the science to back our claims that we are not “just fatigued”.  We know definitively that activity outside of our limited envelope is dangerous and leads to setbacks and deterioration.
 I think it’s also time we recognize that the Severe ME patients have been completely ignored by health agencies around the world as well as too many advocate groups, and that it is time they all include information specifically geared for the severe patients. #SevereME awareness day is August 8th.

 In reviewing the July 3, 2017 update to the CDC website, which many have applauded as a step forward, I want to point out that the changes I see are cosmetic.  The links for the doctors continue to push for graded exercise as a treatment option.

 Following are some of what I see is missing from the CDC website and from too many “CFS” conversations:  

  • Paralysis of patients 
  • Muscle malfunctions leaving patients bedbound and/or needing wheelchairs that is NOT from deconditioning.  
  • Cardiac abnormalities which can lead to premature death.    
  • Heart rate abnormalities that should be seen by an EP Cardiologist and CAN be treated with medications like Corlanor. 
  •  Immune system dysfunction leading to reactivation of viruses, food and medication intolerances, and higher risk of cancer.  
  • Energy production malfunction at the cellular level leaving patients unable to care for themselves. 
  •  Broken oxygen exchange system as described by the Workwell Foundation which can cause toxicity issues that need to be addressed to improve quality of life. 
  •  How truly disabling this disease is.  The continued statements about “tired after shopping” coming out of the CDC needs to be confronted.  Those of us who are on the lower end of the function scale can seldom go shopping and if we do it’s not just “tired”, it causes a disabling crash. 

 Do you fit the International Consensus Criteria?

 Here is an easy questionnaire you can use as a guide: http://bit.ly/2gsuEhM  

Colleen Steckel Founder North Carolina & Ohio M.E./FM Support Group  http://bit.ly/2uuy3IB 


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